Our Newly Ill Face Their First Holiday Season with ME/CFS

Don't look now! The holiday season is on its way. I've lived through decades of them with ME/CFS. So have many of you in our chronically ill community. That's beyond sad for all of us. But at least we have some idea what we're contending with, and have learned our ways of handling it ... or not.

For the newly ill, though, life is suddenly full of ominous shadows and question marks. I'm betting all of us old ME/CFS veterans can remember the first time everything was ripped away, regardless of how many years ago it happened. There's no pain quite like that first onslaught.

I remember the Herculean challenge in my early stage of illness of trying to be a mother and wife at Christmas time. I used to bake and decorate and do the holiday shopping. I belonged to community groups and churches that would throw parties. Sometimes I was in charge of the group and helped throw the party.

I loved the work, the preparations, and let's face it, I loved the accolades that sometimes came with it all. I knew who I was and I liked who I was. That era was hectic and blissful. And then came the falling of the curtain on the whole thing.

It was many years ago but in some ways it feels like it just happened.

But for the newly initiated among us ... it did just happen. And they are understandably terrified as they struggle with the loss of their familiar lives and the new task of hanging on for dear life. They are faced with the loss of their place with their communities. Their roles and camaraderie are slipping from their frantic and shaky grasp.

Their children are suddenly faced with a mom or dad who is not pulling their weight, is not fulfilling the seasonal traditions that they've come to expect. Or more accurately maybe the kids are not being faced with their parent at all. Because not only is Mom or Dad not providing the usual holiday fare of any type, they may not even be able to show their faces outside of their bedroom.

Disappointing your family is torture. But at least in such scenarios, there is family, yes?

Not so for those who will be all alone. Not for the ones now having their first year of isolation, loneliness and dismissal. No one is there to talk to, to reassure, to help ease the misery and the dread. And unlike us oldsters who are all familiar with this state of affairs, these newcomers are not used to it at all and it is a tremendous blow.

Maybe you're like me, and you've lived with ME/CFS for decades. If so, you know that this holds its own unique tragedies. There's nothing to shout about when your life has been put on hold as your illness has dragged on.

But over all that time, you have hopefully been able to develop some strategies to manage the pressures and logistics. And if you are like me, you have managed to lay hold of some friends online who are likewise chronically ill and understand. If you're like me, some of those internet friendships have already lasted for almost a decade.

It ain't exactly normal but it is a status quo you've learned your way around and you're grateful for the company, even when it is mostly online. We have hung in there. We may have done so on our faces, but we've hung in there nonetheless.

But maybe you're not one of the long-time Phoenix Rising community. Maybe you have just recently been clubbed by ME/CFS.

You're visited with bleak and terrifying changes to your life and sense of identity, to your abilities to meet expectations of the people who matter in your life. And maybe as the snowball picks up speed and increases in size, you wonder in panic where the juggernaut will stop. Will it ever stop?

More people falling ill all the time. They're starting at Square One, not knowing where to turn. They are being dissed by medical professionals, friends, family and former co-workers. They're faced with possible loss of employment, loss of income, and whatever status they used to have.

And getting to be doused in all this just before Christmas? Priceless.

I remember too many Decembers when I had to just curl up and shake. The first ones were the worst, though, I have to say. My self image, self respect, and sense of who I was melted down.

My family was shocked, I have no doubt. But I was probably even more shocked than they were. How could I just ... let go of things? That's not the kind of person I was. But I had to become that person.

So many dismal milestones of disappointment and loss. Have you been through some of these? Maybe you've gone through other ones as well.

- But I always bake pies.

- But I always do my own Christmas shopping.

- But I always take my kids to holiday events and activities.

- But I've never spent Christmas Eve in bed, seasick and gripping my pillow for dear life. I've never said No to our holiday traditions. I'd never leave my kids hanging and disappointed because Mom (or Dad) is just ... not ... there.

But this is the reality we all share to some degree. And it's a big part of why Phoenix Rising exists, and why this community has lasted and grown. It's why we all come here. Because whether we are old-timers here or newcomers, we need each other. We can lift each other up, share information and encouragement. We can hold the fear at bay for a bit.

We are creating a network the likes of which none of us have ever seen before. And as we continue to build this home and community, we can also offer some relief and protection under our seasoned wings for the newly fallen.

Remember when you discovered that you could turn to Phoenix Rising and connect with friends here who understand what you were going through and how lonely it all was? This experience has helped to prepare us to offer that same hope and help to our newbies.

Happy Holidays to the old and the new. We are all in this together. I'm so glad we can gather here.

Comments

So lovely and so true. I’m in my 16th year with ME and mine comes and goes in the sense that it can improve for a few weeks at a time but it never goes away completely. I’m currently in a bad patch, and Christmas is looming on the horizon and my kids are excited and I’m trying to fit everything in. I luckily only work relief hours and have time to rest during the week. Even with this I’m still in bed or on the sofa covered in blankets as early as I can be. My husband is quite understanding but this place is the most understanding of all. There is no judgement or criticism, just open arms and ears ready to listen. Thankyou everyone

I felt so much shame for the first years that I could not "Keep up Appearances". My daughter is too young to remember when the weekend before Thanksgiving was the weekend I decorated my salon, then house. The older kids knew the drill, sadly. I would then be too busy for the month of December working, to do much other than stand behind the chair and get my clients in before the big day. I think was functioning with CFS for years. I drug myself home after work and plopped on the couch, but at least I could pay the bills, watch movies, and cook on the weekends.

Then a high fever took me all the way down and I have been home now 8 years. I have gotten sicker and sicker over the years. I had a crescendo with the real flu type A and a long stay in the hospital last year. I was left flat on my back and helpless. A few months after that I saw Unrest, and found this community and I am ever grateful! I have struggled to get back to a functioning base line for just over a year.

My budget for buying for our many children is much less, but Amazon has really good deals if I spend 10 minutes a day looking at their daily sales. I never have to buy boxes! I don't know how I will get them wrapped this year, but somehow it always gets done. I have had all the kids wrap the other ones gifts when they come by and swear them to secrecy!

One thing about all the adult kids, is that they feel so powerless! If I can tell them some specific thing to do... one way they can help me they seem more comfortable.

Last year, the best I could do was go out to the living room to my old spot on the couch, for opening gifts, and one glass of champagne. I watched Miracle on 34th Street with my daughter. She had never seen it and really loved it! The older kids have their own things to do and some live out of state. I could only text with them a little last year, but I might be able to handle phone calls this year.

As time has passed this Holiday season has gotten easier for me, but it has been a long road with me kicking and screaming the whole way!

Have the most loving, patient and peaceful holidays you can. I think that is what I have learned over time.

So lovely and so true. I’m in my 16th year with ME and mine comes and goes in the sense that it can improve for a few weeks at a time but it never goes away completely. I’m currently in a bad patch, and Christmas is looming on the horizon and my kids are excited and I’m trying to fit everything in. I luckily only work relief hours and have time to rest during the week. Even with this I’m still in bed or on the sofa covered in blankets as early as I can be. My husband is quite understanding but this place is the most understanding of all. There is no judgement or criticism, just open arms and ears ready to listen. Thankyou everyone

Yours sounds similar to mine. Most of the time I have worked my way back to what I call a "dull/ normal" -- not as smart or as quick as I was before illness. But not the vegetable I had been for a few years, anymore. It comes and goes, with this time of year being the most affected till early spring.

The advantage we share in having been sick a long time is we have developed some strategies, and have learned how to manage. Thank you for sharing your thoughts and experience.

I felt so much shame for the first years that I could not "Keep up Appearances". My daughter is too young to remember when the weekend before Thanksgiving was the weekend I decorated my salon, then house. The older kids knew the drill, sadly. I would then be too busy for the month of December working, to do much other than stand behind the chair and get my clients in before the big day. I think was functioning with CFS for years. I drug myself home after work and plopped on the couch, but at least I could pay the bills, watch movies, and cook on the weekends.

Then a high fever took me all the way down and I have been home now 8 years. I have gotten sicker and sicker over the years. I had a crescendo with the real flu type A and a long stay in the hospital last year. I was left flat on my back and helpless. A few months after that I saw Unrest, and found this community and I am ever grateful! I have struggled to get back to a functioning base line for just over a year.

My budget for buying for our many children is much less, but Amazon has really good deals if I spend 10 minutes a day looking at their daily sales. I never have to buy boxes! I don't know how I will get them wrapped this year, but somehow it always gets done. I have had all the kids wrap the other ones gifts when they come by and swear them to secrecy!

One thing about all the adult kids, is that they feel so powerless! If I can tell them some specific thing to do... one way they can help me they seem more comfortable.

Last year, the best I could do was go out to the living room to my old spot on the couch, for opening gifts, and one glass of champagne. I watched Miracle on 34th Street with my daughter. She had never seen it and really loved it! The older kids have their own things to do and some live out of state. I could only text with them a little last year, but I might be able to handle phone calls this year.

As time has passed this Holiday season has gotten easier for me, but it has been a long road with me kicking and screaming the whole way!

Have the most loving, patient and peaceful holidays you can. I think that is what I have learned over time.

Yes! The sense of shame I carried was hard to bear and was so thick especially in the early years. I still find I have to shake it off of myself from time to time. I am sure I am covered in it a good deal of the time without being aware of it. It has been an unwelcome companion for so long.

Kicking and screaming. That's how I picture myself, especially in the early years of new and fresh loss, of involvements with friends and community ... People may see this illness as a quiet and droopy thing We may not say much, we may not do much. We may lay around a lot. But inside of us? It is not quiet or droopy. My mental picture is of being kidnapped -- of being dragged away by someone or something bigger and stronger than me -- with their tentacles wrapped around me as my arms and legs flail, as I yell and scream as loud as I can for any kind of help ... Well. you know what I mean, don't you.

Thank you for describing what you've been through, helping us to picture it. We are all stronger together than we were on our own.

It has been 13 plus years for me too, and this year is really hard because I had to have 2 cataract surgeries.. This not only laid me low, but spent what little extra money we had.. I am lucky to have a hubby who understands, and no small kids at home, so no tree or decorations, or menorrah, etc. Luckily there is online shopping and I do not shop extravagantly... My family understands and my wonderful younger brothers tell me to not worry, just get cards or make them... I know this sounds disjointed.. I feel lots of brain fog/confusion today, but wanted to post to others that it can work if you have support, which I do.. You need to downsize your expectations and learn to be o.k. with that.. It is difficult, but what is the alternative? Take care all you lovely folks!!!!

It still makes me cry that my youngest child listens to the older children tell stories of life "before mom got sick". With wide, incredulous eyes, he will look at me and ask if they are true. He doesn't remember the "real" me. His childhood memories are so much different than his siblings. But he is a happy, loving child who still has his mama, and that's all that really matters. Hang in there everyone. We are warriors, fighting a never ending battle. I am so grateful that we have a place to come and cheer each other on.